Trek for Tourette walkathon this Sunday

TREK FOR TOURETTE

Jennifer Bowman

The members of the Tourette syndrome support group in Bracebridge are preparing for the annual Trek for Tourette. The Trek takes place each March, rain or shine, to raise money and awareness for the disorder.

FAMILY ORDEAL

Photo by Jennifer Bowman

Scott Forth and his mother Audrey worked through Tourette syndrome together from the earliest days when they didn’t know what he was dealing with to now. Audrey still attends the Bracebridge Tourette syndrome support group to show support for her son, who is now a Grade 2 teacher at Muskoka Falls Public School.

BRACEBRIDGE - He grew up twitching, blinking excessively, and shrugging his head and shoulders uncontrollably. He had a chronic dry sniff. And then there was unexplained anger.
Shawn Forth has Tourette syndrome, only as a child, he didn’t know what it was.
“Growing up I always felt like I was the centre of attention,” said Forth. “I felt weird, I thought it was bad habits.”
It was a difficult time of trial and error, trying to figure out was wrong, for both him and his family.
“I’m a retired RN. I knew nothing about Tourette’s,” said Shawn’s mom Audrey Forth.
“We went through the whole (gamut) of maybe it’s the eyes, you go and get the eyes checked, the eyes are fine,” she said. “Well, maybe it’s too much TV watching, so you pull back on the TV. So you’re sort of problem solving but getting nowhere.”
Tourette syndrome is often undiagnosed. Because of that, estimates on how many people have the disorder varies from 1 in 2,000 to 1 in 100.
Sunday, March 25, Trek for Tourette walkathons will be taking place across Canada to raise funds and awareness to help improve the quality of life for those with or affected by Tourette syndrome. Forth is organizing a Muskoka event to begin at Memorial Park in Bracebridge at 1:30 p.m. to help raise awareness for Tourette syndrome locally.
Forth found out he had TS in high school. He now teaches Grade 2 at Muskoka Falls Public School. Once a month, he organizes a meeting for people who have TS or are interested in learning about it. The meeting creates its own challenges for him.
The more he talks about it, the more he tics, said Audrey.
Later, he said he was wiggling his toes as he spoke to release the tics without being as visible.
Tourette syndrome shows itself most commonly in eye blinking, head jerking, shoulder shrugging, facial grimacing, coughing, throat clearing, yelping and tongue clicking. In more complex cases, it can involve jumping, touching other people or things, smelling, uttering ordinary words or phrases out of context, and more rarely, hurting themselves or swearing.
Crystal Suomu grew up trying to hide her tics to gain acceptance at school. The tics are less violent now since she has learned to control them. She was also wiggling her toes as she spoke.
Suomu starting to notice signs of TS in her infant daughter: shrugging her shoulders, rubbing her face and head up against walls, jerking her leg and an evil laugh.
That is making Suomo’s tics worse.
“My parents can tell that I’m increasing,” she said.
Studies show TS is often, but not always, a genetic disorder. Boys are more likely to have it than girls.
It is associated with other disorders such as attention deficit disorder, learning disabilities, mood disorders, rage and aggression. It is then known as TS plus.
“TS often isn’t the problem, it’s the plus that’s the problem. Every person with Tourette’s could have any other number of disorders associated with Tourette’s, and that’s where problems can lie,” said Forth.
There is no cure for TS, only medication, which works for some, but not for others.
Forth decided to take medication for a while, but it worsened the symptoms of his obsessive compulsive disorder.
His mom remembers those days.
“Everything has to be symmetrical, so he was thinking how he would type words on a typewriter making sure he had the same number of letters with each hand,” she said.
He quickly stopped the medication and the OCD went back to normal, she added.
“He just felt he could deal with the tics better with the OCD,” she said.
Forth was finally diagnosed after his mom found a pamphlet on a trip to Sarnia. She left it lying on the kitchen table where he found it and recognized himself.
“I read through it thinking, they’re talking about me, all this stuff going through my brain, touching things with my right hand, my left hand, didn’t make any sense to me, but man, it’s described right here in this pamphlet,” said Forth.
Once he was diagnosed by a doctor, life finally started making more sense for him and his family.
“It was only after he was diagnosed that you realized that, oh, when he wanted to beat up on his sister, that was the rage and aggression,” said Audrey, “and when he was doing all these weird movements, he really couldn’t help it, but you thought that he could. It was frustrating.”
Anyone interested in registering for the Trek for Tourette walkathon on Sunday, March 25 at 1:30 p.m. at Memorial Park in Bracebridge can visit tourette.ca.